Monday, August 31, 2009

Monday, August 31, 2009 4:55 PM, EDTToday we went to the medical center for day one of chemo. Ally's doctor called 3 phones before she actually got a hold of one of us yesterday (dedication!) to tell us Ally's counts were super good.

Today ran a little slow, as it always does, but Ally was in a good mood, we got to play in the playroom and Ally took a good nap. Ally will continue with chemo this week and next week she will do 4 days. Everyone gets Labor Day off!

Ally has been doing well with her potty training. She has peeded one time in the potty every day so far. I'll let you all know when she is fully there, until then, this is the last potty update...

In the late spring Ally was showing signs of being potty trained. At that point we were not really sure what her medical future held. (If there was going to be a lot of hospital time, it wouldn't be worth it to us to train her.) So, we waited for that time in July were she had scans and we decided to continue with chemo.We went out and bought a potty and some other training things. Ally then decided "no thank you". So, her potty has been sitting in the bathroom, unused for a couple of months.We have been trying to encourage her along the way. We told her that the moment she actually used the potty we would go for ice cream.Last night she was pretending to go potty on a little wooden toy box she has. I suggested that maybe we could switch it out for her real potty. She was agreeable. Then, she sat down and peed. It was crazy! Of course she remembered the ice cream deal. So, even though it was 7:30 last night (when we normally bring her upstairs for her nu-nights routine), we headed to the store for ice cream!!!

Saturday, August 22, 2009

The Red Panda, also called the Firefox or Lesser Panda (Latin name: Ailurus fulgens, "shining cat"), is a mostly herbivorous mammal, specialized as a bamboo feeder. It is slightly larger than a domestic cat.

The giant panda (Ailuropoda melanoleuca) first appeared in the evolutionary record during the late Pliocene or early Pleistocene, some two to three million years ago. Panda fossils have been found in Burma, Vietnam, and particularly in eastern China, as far north as Beijing. Pandas were once widespread in southern and eastern China and in neighbouring Myanmar and north Vietnam. Today, however, there are only around 1,000 left. All of these are found in one geographic region - the bamboo forests of southwestern China.

Giant pandas are classed as bears by most scientists. Unlike other bears, they vocalize by bleating rather than roaring. Until recently, giant pandas were grouped with raccoons and lesser pandas (i.e., the Procyonidae (raccoon) family). This decision was based primarily on physiological evidence. In the late 1980's, DNA/serological studies clearly established that giant pandas are clearly more bear than raccoon. Some scientists want to place giant pandas in their own grouping; but for most bear researchers, this does not seem warranted.

Friday, August 21, 2009

Thursday, August 20, 2009

Refugee River

Saturday matineesfor years those reelswere more real than my childhood

We had to watch that warthat is where my fatherwas, somewhere in thatgrainy black and white

Was she hoping, prayingto catch a picture of him?Him who was in a silverframe next to my bedso I would not forgethim. Next to hers.

But never did. Instead,rivers of refugees, fleeingnow from this city, nowfrom that. Sometimesbecause of us. Sometimesbecause of "them."

Them made smoke and firethem made the faces of the womenafraid, and the children, mysize, tormented. I didn't know thatword then. But I knew thelook on the face of the childcarried in a grandfather's arms.

Monday, August 17, 2009

Saturday, August 15, 2009

Thursday, August 13, 2009

Lend4Health is a non-profit that facilitates community-funded, interest-free micro-loans as a creative funding option for individuals and groups seeking optimal health. Currently, Lend4Health is facilitating loans for the "biomedical" treatment of children and adults with autism spectrum and related disorders. Other health issues may be included on Lend4Health in the future.

Wednesday, August 12, 2009

Monday, August 10, 2009

Sunday, August 09, 2009

Friday, August 7, 2009 9:54 PM, EDT

Ally got to spend a lot of time with Grammy and Grampa Moore this week. Mommy had a 2 day conference in Maine (that involved Lobster, wine and a lot of math) and 4 hours of work today! Wow, that's a lot of work for the first week of August. I will have to get a massage next week just to recover! Ally had loads of fun with Grammy and Grampa, so much so, she didn't think she needed a nap on Tuesday and Wednesday. On Thursday Ally napped from 12:20-1:37 and 1:43-2:34ish. She made up for those missed naps! (Her average is about 45 minutes a day.)

Ally also got to see Grammie and Grampa Schulte tonight for dinner, one of Mommy's teacher friends and Auntie Kelly this week. She is a popular munchkin.

Tomorrow night Mommy and Daddy have something fun to do and Grammy and Grampa Moore have the fun task of hooking Ally up to her feeding tube and putting her to bed! This will actually be the very first time one of us has not been home (or wherever Ally is) to put her to bed. She'll (we'll all) do great?!?

Ally has successfully taken all of her GCSF shots ("little cry Mommy?"...the silly kid asks permission to cry with each injection. She actually does a very little cry. As soon as the needle is pulled out she stops. What an awesome kiddo!) She will have blood drawn on Sunday to make sure her counts are high enough to start chemo on Monday. If they are Mommy, Auntie Lynn and Ally are headed to DHMC for a 9AM appointment! Finally a reasonable time. (Day 1 of chemo usually takes 5 hours...that means those 1PM appointments keep us there until 6PM, and then an hour drive home.)

Okay, well, wish the Moore family luck for tomorrow night. Hopefully I will not have to post a story about Ally staying up until Mommy and Daddy got home. Also, cross your fingers that counts are good.

Have a great weekend.

Note: Ally's Mom says that the evening when they were going to be out past Ally's bedtime for the first time, while Grammy and Grandpa stayed with Ally, it came time for them to leave and they braced themselves for a scene. They said they were going out, and Ally said, "Thanks for stopping by!" and went back to playing with her toys! Ha! She is a riot! :-D

Sunday, August 9, 2009 3:19 PM, EDT

We just got a phone call. Ally's counts are super fantastic and she is a go for a full round of chemo.

For those of you keeping up: Ally did great with Grammy and Grampa (of course). They took her to a park, a wantwant (restaurant) and gave her a pop all before the time we needed to call because we forgot a key detail to her bedtime routine. Her only little glitch was staying up a bit later than usual. We put her in her crib just before 8PM and sit with her until she is asleep. This usually happens by 8:20. With Grammy it was 9:15. She was super adorable while being naughty though!

Well thanks for checking in! We are looking forward to an uneventful week of chemo.

Sunday, August 02, 2009

Saturday, August 01, 2009

Saturday, August 1, 2009 4:19 PM, EDT

Oh what a fun day!Today was a Schulte Family Reunion (with a sign that said "Ally's Party"). There were so many new people for Ally to meet, Daddy and I were very nervous Ally would shut down and cling to our hips. Of course, Ally rocked it out! She was playful with a couple of her cousins, ran around tons and tons, loved the super high swinging swing, ate food, gave hugs to Auntie, Uncle, Grammie and Grampa, and gave high 5's to pretty much everyone else (a HUGE step for her!). It was so nice to see all the Schulte relatives, and Mommy and Daddy are super appreciative of everyone giving Ally her space and allowing her to do what she wanted, which was run up and down the little hill to Grampa. Such a fun day, and as a bonus, Ally slept the WHOLE way home. Thanks Schulte family for being so awesome.

Today, pondering whetherto put panties on to go tothe store, I remembered(as we all do) our mothers' warningsabout accidents, and, too,Angie's mourning the cut-uppieces of her favorite pjsreturned to her when shechecked out of the hospitalafter her heart attackRunning her hands over thepieces of pink silk,weeping. Not often didthat life have pink silk in it

Earlier, an old friend hadsent news of an old friend'ssuicide. The summer afterEdwin died. I suppose I thoughtafter his death that no one elsecould ever die. . . .

One can blow one's brains outin an apartment in Greenwich Villageif one wishes. But must use ashotgun, because of gun laws.

About Ron: I knew himwhen he was the "Mad Scarf"of Taliaferro Hall ~~ our residentpoet-ghost walker. His nose alwaysrunning into that magnificent mustache.The red scarf a banner, a talisman.I knew him before he was Liam, beforeany of the three wives, before the daughterbefore NYC. Before he learned to play the system,before cancer, before heart problems (he never had problems loving).All he was when I knew him was one of the very best poets.It was not enough.

As I near 70, all the deathsmight weigh me down, were theywhat I remember most. But what Iremember is the love ~~ thatthey lived, were joy, and found ahome in my heart.

About Me

Water gathering
most days I wait
through blue and sun
till dusk
or even later
and the rose has faded
to lavender, to gray
some days, the sleet
has started
and the leaves underfoot
are slick with ice
somehow I'm never sorry
and never learn
one night I waited
till the stars were out
dropped the bucket into
sound, only felt the weight
of it filling
and the night full of stars
and the river full of stars
and the bucket full of stars
come morning, the coffee
is also full of stars